It's Been A Rough Year

[pozgingerbearbttm]

Brief background on me: I'm 28, on disability for severe bipolar disorder, live with my disabled mother (she's got diabetes, diabetic neuropathy and COPD) and my best friend/adopted sister/hag (both of whom also have bipolar and a grab bag of other mental illnesses).

In the last six months I've had a rough time: November I didn't get a disability check, December my landlord didn't renew my lease so I had to find a new place with less than 30 days notice, January I had to move in the rain on New Year's Day, February my mother (who I live with) set herself on fire by falling asleep smoking with oxygen on, March I didn't get a check again (paperwork is brutal and bureaucracy sucks), my mom was released from the hospital, then immediately went back in with a 103 degree fever and ended up having foot surgery, my best friend was hospitalized for mental health reasons and then in April I tested positive. 

 

So far I'm surviving and handling things relatively well. But I need support in being poz. I've been barebacking (anonymously and with regular fuckbuds) for a long while now and it's not exactly a shock for me to test positive (I knew it was going to happen sooner or later) but it's one thing to think that it'll happen eventually and another when the nurse comes in and tells you the results were positive. I saw my primary who referred me to a specialist. I've gotten my CD4 levels (500) and viral load (7,000). I told my partners (those that I know).  I'm already in therapy and my therapist is helping me deal with it. I also started taking meds (Stribild)

But I'm scared. I live in terror of infecting someone. My mom currently has multiple open or open-isn wounds due to the surgery and the burns (nothing open to the air, but her foot is bandaged and her hands have blisters and such that are capable of becoming open). My sister/friend compulsively bites the edges of her nails (not the nails themselves but the beds. I know, it's weird but it's a symptom of her anxiety issues) and she can't stop herself. And I've been flirting with and am probably soon going to be dating a negative guy I met recently. (I haven't hooked up with anyone since my diagnosis and plan on being both safe and monogamous if/when he and I end up hooking up)

On top of fear of infecting someone else, I'm having a lot of trouble knowing what to expect. I grew up on (and have pretty much only seen since) Rent and other portrayals of HIV/AIDS all set in the 80's and 90's when it WAS a death sentence. I know it's different now. I know with meds it's manageable. But the only portrayals/representation I have for HIV positive men are either the dying guys from movies set during the beginnings of the epidemic or the fetishized chaser/giver community online (hell, I've read A LOT of stories on this site in the giver/chaser section myself) and while that's a hot thing to read or fantasize about, it's not very helpful in figuring out what day-to-day life changes come about with this disease.

When I first tested positive, I tried to do some research on the disease as a whole but frankly it was like checking symptoms on webMD. Everything negative, terrifying and awful leapt out at me and scared the crap out of me. I spent a week freaking out about if when I'd get AIDS Dementia Syndrome and lose my mental facilities. 

TL;DR How does being poz genuinely and tangibly affect day to day life? Where's a good place to get support without broadcasting my status all over Facebook? In general, HELP!

[bearbandit]

Wow! That's some list of things to deal with. First off, you don't say where you are so it's pretty impossible to give you ideas on where to go for support (I truly think that phone or face to face support is better than internet support when you've just found out you're poz).

Your fear of infecting other people: after a month or two on stribild your viral load should be down at the undetectable level (between 20 and 70 copies, depending on the sensitivity of the equipment the lab uses). Sexually, the general rule is that if you have a viral load under 1,000 you pretty much non-infectious, though someone here posted an anecdotal report of someone who passed it on with a viral load of 380+. In the European PARTNER study (following serodiscordant couples who don't use any protection) they define "undetectable" as 200, which it probably was when the study started. The only seroconversions that have happened on that study have been when there's been a third party involved. None, I repeat none, of the monogamous couples have had the negative partner seroconvert.

When you're helping looking after your mother, you should be using "universal precautions" which, in this case means go out and buy a box of  rubber/vinyl surgical gloves and wear them when changing dressings etc.

 

What you can expect is the life you were having anyway, possibly a little longer because you'll be seeing your HIV doctor and they tend to be pretty good at picking up other problems early. Most men tend not to "bother" their doctors, so things tend to get a lot worse before they see their doctors.

Even in the 80s/90s, HIV wasn't necessarily a death sentence: I got it in 1980 and somewhere between fifteen and seventeen drug changes since (I was asked to count them by a local HIV charity), I'm still here. And I can assure you I was no shrinking virgin throughout that period. There are other guys around here who have been poz as long as I have. I guess we got lucky, because the first drugs (I started on meds in 1989) were crap, to be blunt about it. Today's drugs are kinder on the body and bloody effective.

Yeah, chasing/giving can make for some very hot fiction, but that, to my mind, is where it belongs. I'm reaching the end of the first edit of a novel in which chasing/giving is a major part of the plot (such as it is).

 

One of the things I often say to guys who are newly diagnosed is "leave google alone". The reason being, as you've discovered, that there's enough crap out there to scare the shit out of you. The two sites I recommend are British sites (basically because I know people who work at the organisations and trust them with the info they make public): www.aidsmap.com and www.tht.org.uk . There are a number of secret and closed groups on Facebook, but you have to know about them to join them, which is a bit of a Catch-22 situation.

I freaked out about the very same thing when I was diagnosed: aids dementia syndrome... Although some dementia has proven to be caused by another virus that needs the immune system to be low before it starts causing damage, HIV itself gets into the brain, but today's medications keep your viral load low enough that this rarely, if ever, happens. When I get forgetful, it's way more likely to be age related than HIV related.

 

At your age, and having started drugs so early on in your infection, the only real difference being poz is going to make to your life is seeing your doctor on a regular basis, taking a pill every day and letting the guys you fuck with know (it's only fair). Nothing else.

Let us know how you get on...

[pozgingerbearbttm]

Thank you SO much for your reply. I had no idea Stribild (or meds in general) could get someone to undetectable so fast. I figured I was looking at year(s) before it was a consideration. As for where I am, I'm the the philadelphia suburbs (Montgomery County near Bucks if that's relevant). I live a town that's somewhere between Mayberry and Agrestic from Weeds. Everything's white-bread and suburbanite but everyone's doing drugs and there's a huge drug/poverty problem. Basically there's zero LGBT centers or anything for a few towns in any direction and I have no reliable transportation (no car, public transportation's iffy around here and I can't rely on friends for rides for anything as regularly occurring as a support group) so stuff in Philadelphia or similar are out of the question, hence me looking for online support. 

Considering that until recently I was on meds for my bipolar, I was already expecting to be taking pills my whole life. It's mildly annoying that I got off the psych meds (and doing amazingly well without them) and now I have to go on a different type of medication, but, hey, better than not having them and dealing with this illness without them. 

I apologize if my comment about the 80's and 90's was remotely offensive. I just meant that the media portrayals set in that era show a lot of worst-case scenarios and that there's a world of difference now. I'm so glad that you are going strong and that you made it through what was undeniably an awful time for our community. 

Once again, thanks for your response. I'll keep this thread updated on my progress/experiences. 

[TigerMilner]

I find Poz.com to be a good reliable source for HIV information. It is easy to read and not so overwhelming. And my doctor told me when I was going thru what you are now not to read anything older than 2012. That is how much things have changed. Oh, and I was undetectable within 30 days of going on meds. You shouldn't have anything to worry about as far infecting others once you are on meds and take them as instructed.

[wood]

I really enjoy the body.org, and they have a great Q&A section on there about questions you may have.  As far as infecting others accidently.  Dont worry. unless you have huge bleeding wounds, and are bleeding all over your mom, you are not going to infect her.  

[bearbandit]

It's four weeks since we've heard from you: how are things going? Remember: the only stupid question is the one you didn't ask!

[PhoenixGeoff]

Some excellent advice here so far.  A couple things I'll add:

 

It sounds like you're kinda wrapped up in a situation there with your mother and your friend where it's not the healthiest environment.  That's made even more complicated by the fact that you are on disability.  In a situation like that, it's very easy to get completely wrapped up in whatever drama is going on.  It sounds like you've been the one who has had to step up and keep the household together and that can be really draining, so it's really important to do some things for yourself.

 

First, get some regular, normal, human interaction (not online...in real life).  Dating is good, but you don't want to put all of your emotional eggs in one basket.  Find yourself a good circle of people to hang out with who can become friends (note they don't have to be gay, in some ways it may be better if they are not, though you should feel comfortable coming out around them as gay...your HIV status is none of their business). 

 

Easiest way to do this is to find a group of people who get into doing something that you like.  Could be anything from a bowling league to a book club to a church group to a knitting circle.  The main thing is that it gets you out of the house and around reasonably healthy people.  Note:  this is not a support group.  The point isn't to go in and talk about your problems.  Rather, it's supposed to be a time when you can do something you enjoy with people you like.  That's all.

 

Second, (if you're not doing this already), find a way to get physically active.  You don't have to go to the gym and lift weights if that's not your thing (though a lot of cities have community centers with workout facilities that will cut you a deal if you're on disability).  Could be as simple as riding a bike around town or hiking or getting together with a group of friends to play basketball.  The point is, it should be something that you enjoy doing and can do on a regular basis.

 

Physical activity has been shown to improve your immune system, so it's important for people with HIV.  It will also help keep your spirits high...it's a natural antidepressant. 

 

Third, (and you're doing a lot of this at home already), find a way to go out and give back to the community somehow.  Especially with HIV, especially if you're on disability, it can be extremely easy to start getting down on yourself.  Finding a useful way to give back will help combat that.

 

You'll note that all three of these suggestions involve time away from your family.  You may feel that that's not possible, that your mother needs 24/7 supervision and help.  Sometimes family members in that situation will demand attention more attention than they need because they're resentful of their situation or afraid of losing what little they have left.  Hopefully your friend can help split the duties of caring for your mother.  And remember that by taking care of yourself first, you're preserving your ability to care for them too.

Edited September 21, 2015 by PhoenixGeoff

[berlinboi]

Meetup groups are good and there may be some with your interests. Meetup.com

[pozgingerbearbttm]

Hello everyone. Sorry it's been so long since an update, but life was just racheting up the crazy there for awhile. Anyway, I'm doing great.

I'm still on Stribild and I've been undetectable for months and still going strong. I've made a couple new friends (mostly straight boys, but hey, they're cool) and I've been walking a lot for fun and exercise. The relationship with the neg guy I mentioned didn't work out... But because I'm poz and he's neg, we just weren't compatible long term. Overall I've adjusted pretty well.

I've started hooking up again. Yeah, I didn't really think the monogomy or bust thing was going to last... I've always loved sex too much not to be a bit of a slut. :-) It is a little harder now, though, because I ALWAYS disclose my status before I hookup with a guy. Most guys aren't interested in taking the risk of fucking a poz guy, and I can't blame them... I was the same when I was neg.

The only thing that bothers me even semi-regularly is when I tell a straight friend about it and they want to talk about every physical interaction and shared item/surface to make sure they can't catch it from sharing my silverware or using the bathroom after me. Other than that, it barely affects my daily life.

I got connected with Project Hope/Family Services. I have an amazing case worker with them and it's made a huge difference in how I see living with this and they also help me get to my specialist appointments.

TL;DR- So, thank you all for your support and wisdom; it meant the world to me. I'm doing great.